I am not, lately, known as a social person. Since the tongue and neck thing, in particular, I have tried, and I think at first I did a good job with it, but eventually, and with the things that followed, I sort of closed up a bit.

There is always eating involved, principally, and that is, or can be, awkward for me. For a time, even drinking was an issue. Still, I made it out there, hung out with my friends, did what I could to fit in.

Eventually, though, it became, not too much, but not enough. Or both. I am not sure. I was frustrated with being treated like I was normal when I certainly was not, and at the same time I was frustrated with being treated like I was different, which, in fact, I was, to some degree, but not enough to be treated that way.

It was an interesting dichotomy, to be sure, but a frustrating thing to live with.

I chose the wrong thing, and not on purpose, but just by happenstance. I began to turn down offers to go with my wife to functions. Watching people eat almost killed me. It was hard to bear, to be honest, to smell the food, to see it, to savor it and not be able to eat it. But that is just an excuse, really.

It is a good one, don’t get me wrong. There is not much tougher than sitting at a table burdened with bounty and people piling a bunch of it on their plates while you are, at some point, not even allowed any more to smell it :).

I ignore that dictate, by the way, whenever I want to. The wife just thinks she controls me :).

But it is true that I have tended to avoid social occasions. Avoid? Hell! I have run in the opposite direction!

The food thing is one thing, maybe the critical one. The other is that I look like I am dying, in my humble opinion, even though I am purportedly not doing so now. I am underweight and working on that, I’ve lost some hair, and the hair I have is gray. I am not being fashion-conscious here, folks, but simply telling you that I already had two strikes against me for my friends: he can’t eat and he looks like he is dying.

That tends to freak people out, more so if they care about you.

Oh, and strike three? I have an anxiety issue, something that came up before the cancer, so I cannot blame it on that, but it was under control prior to the cancer, and is now back pretty much in full force.

I have not been a social person.

Last night, Thursday night, my wife hosted a party for her business women’s group. I frankly went to this room, which my son calls the Bat Cave, and hung out for much of the night. I do not think most men would blame me for that. Who, after all, wants to hang out with a bunch of ladies, most of them elderly, eating and chirping and cackling?

Not me. Not my son. He came to me for refuge. I had none for him, so he went to bed :).

Eventually, though, I did go out. I took some pictures. One lady, I think the youngest of them, was dressed in normal attire and carrying a sign that said NUDIST ON STRIKE. I thought it was cheap but clever, and spent much of the rest of the evening trying to renegotiate her contract, if you know what I mean, and I think you do.

They are wonderful women, all of them, don’t get me wrong. They have shown their concern for me, and especially for my wife, throughout this shared ordeal. There was, however, a World Series game on, and the only one of them who truly intrigued me was the nudist on strike, and I tried all of my tricks but could not get her to take her clothes back off. I even walked by where they were sitting, a load of clothes in my hand, and asked if she wanted me to wash hers while I was at it.

She paused, I think before saying no. Perhaps I am projecting.

That was last night, Thursday night. Tonight, Friday night, was OUR party, our friends, if we had any, our rules, all of that.

I did not know what or who to be. I wanted to be the Joker. The pathos is there, no matter who plays the guy. And the makeup is easy :).

A rodeo clown was suggested, and that is close enough to the Joker without being so tragic that maybe I should have done that.

What I did, though, was to worry.

It has been more than three years since we had a real party at my house.

I mean, by real, we have had relatives here, we have had friends here, but we have not had a gathering of folks of any numbers since a Fourth of July the very year I was told I had tongue and neck cancer.

Between then and now, there has been so much going on, so much weakness on my part, so much chaos, so much of everything, really, that we have never even considered such a thing.

And then there is me. Hiding out in the Bat Cave, the Man Cave, as one friend likes to call it.

I am not blaming this on cancer, by the way. I had the anxiety and panic and all of that long before the cancer. I took care of it, had a successful professional career, in fact, and the cancer only brought it back. My bad. I will fix it. I am fixing it.

In the meantime, as tonight approached, I went into a sort of stasis. I had ignored advice to get a costume or to buy the stuff to make myself into something, and now here we were.

In case you don’t know, I have an adversarial relationship with the mask I wore during my radiation. They screwed me down to a table inside of that thing and strapped my hands down and had their way with my head and neck. It sucked. If you are a head/neck cancer survivor reading this, let me tell you: it sucks.

I hated it, and, yet, I kept it. I have read of a bunch of others who did the same. Some throw theirs away, but a lot of people keep them. I kept mine. But I will tell you, it has been like having a Chucky doll in the house :). I am halfway afraid that it is going to come alive and do me more evil.

That is foolish, of course. But it is also foolish to retain the danged thing, don’t you think?

What possible good comes from keeping it?

Until Halloween.

(When it is not Halloween, the mask is in the deepest recesses of a closet that I rarely even open, I assure you. I hate that danged thing!)

I have put it out in a window for the last couple of years, and my wife says I am a sick pup for doing so. She may be right. One thing for sure, it is not going on MY face.

Until we are having a party and I don’t have a costume and the guests have started arriving, the early ones, and are fairly well decked out.

I ask my wife to blacken my eyes, (not in the usual way :)), and I put fake blood around my mouth. Please note for future reference that I said fake blood.

It takes me awhile, but I stuff my mask into a hoodie (a sweatshirt with a hood, for all of you who are of my generation), and I wear it, and it is, frankly, modestly, looking pretty darned good. It is incredibly scary, even before I add the tears of fake blood from the eyes.

Not bad, if I must say so myself, and I must, because the wife is pretty hacked that I did not plan in advance, and probably even more hacked that I was able to bail out so easily :).

It really is scary. Maybe just to me, I don’t know, but it scares the heck out of me. I look in a mirror, and I want to cry.

A problem develops fairly quickly, however: beverages are hard to put into your mouth through a mask of this sort, and when a straw is suggested, I scoff at the notion. No man drinks a beer through a straw! (Well, my brother in law does, but he has CP, so he is forgiven the transgression.)

This means that I am putting the thing back on when people arrive, and then taking it off, then putting it on, then taking it off. You get the idea.

(I hope.)

So, I put the black stuff around the eyes, and I put some fake blood around my mouth and on the mask, and I am good to go, and all of a sudden, there is a plop.

A plop.

A bit of blood drops onto my hand. What? I know I smeared that fake blood pretty well, and I know I didn’t put any on my ear.

But here it is again! Plop. Plop.

I go to the bathroom, and I locate the source, behind my ear, or so it seems, but everytime I wipe it away, it reappears. I am thinking, already, of my wife’s advice that I have ignored, and knowing that I cannot let her know this is happening, that I think, ironically enough, that I have real blood on Halloween night. But I would rather be wrong than dead, so I walk out to the kitchen and say, Corrine, can you look at this?

She does. To her credit, she only makes one “I told you so” remark. We (she) do some things to fix it and finally just bandage the ear. Turns out my old mask got me one more time.

That is irony. In my land.

I couldn’t wear my mask anymore, and that is probably a good thing. It was prohibiting drinking anyway. Beyond that, I hate the danged thing.

The party went very well after that. A young lady came in with a kid I once coached in soccer (and ran him out of the sport altogether :)) and she was dressed provocatively in a little Bo Peep or Raggedy Anne costume, and I kept telling her that her shoes were untied, hoping that she would bend over. She caught on to me immediately, of course, but eventually, thinking she was fooling me, bent over front facing me, not realizing what I could see that way.

I am sick. I admit it.

My friends were there.

Most of them.

I don’t know what to do with the mask.

It can still bring tears to my eyes, just to look at the danged thing. I should probably throw it away, but the real Halloween is only a week away, and now it is really scary.

Not as scary, of course, as what will happen if Little Bo Peep takes me up on my offer to fly off to Mexico together :).

I cannot make the smooching sound, I cannot pucker up and plant one, I cannot kiss.

I cannot whistle either, and I used to be a danged good whistler. But that is not as big as not being able to kiss. Everyone should be able to kiss, and I cannot kiss.

Whatever they did to me that first go-round, they took away my ability to kiss.

I have tried to kiss my grandson, and I cannot do it. I purse my lips, I move them, and suddenly I realize that I cannot kiss him. I can slobber on him. I can touch his soft sweet face with my lips, for sure, and I have. But I cannot kiss him.

I should work on it.

In the meantime, I am very lucky.

When my wife and I started hanging out together, if you know what I mean and I think you do, I advised her that she did not know how to kiss. Like a great number of people, I suspect, she kissed in a hard, closed-lip fashion. We worked on that and we corrected it.

(Am I anal or what?)

A kiss, in my opinion, then and now, should be soft, succulent, receiving and giving. Corrine was a quick study.

So was my wife.

JUST JOKING! Corrine is my wife.

The thing is, we can kiss. It is because she is succulent, receiving, and giving. I am not trying to be erotic here, although I am about to leave this paragraph in mid-sentence and run off to bed!

No.

Isn’t that amazing though? We can kiss. I cannot even kiss my own grandson, not really, but every time I kiss my wife, I know that it is a real kiss, and I feel it, and I savor it, and I know that I am a part of it. And I know that it is because I taught her how to kiss.

That sounds funny. I know. But no one kisses like her. Well, I mean, probably :).

For cancer survivors, the cancer is always with us, I think, even with those of us who can somehow pull off the magic act and seem to make it disappear. For those blessed souls, all it takes is bad news from a family member, friend, neighbor, or coworker, maybe even merely the announcement on the nightly news that someone of repute has contracted the disease or passed away as a result of it, and the memories come flooding back in, or at least the gnawing little devils on the edge of our consciousness that eat slowly without our awareness reminding us that they are there, still there, after all.

The rest of us, we deal with it in the best ways we can. Yes, we get a cough or an ache or a scratch, and we wonder if it is cancer. Yes, some of us are fatally attracted to our doctors and do not want them to leave our lives, out of an odd fear that in their doing so, despite their reports that all is well, we will somehow now be unprotected from the disease. Yes, some of us insist now on tests that we really do not need at the moment. Yes, we fear our visits to those self-same doctors we cannot live without, we fear the results of those self-same tests we demand, afraid of the results even when we know they will be fine.

Sure.

But we deal with it. Most of us.

And we live our lives and have some spectacular days, some fantastic nights. And we are glad we are alive.

I have come to refer to the night following chemotherapy as Decadron Night. Some of my friends, especially in the CSN community, know pretty much when it is decadron night for your loyal scribe.:) As do the members of my family who live with me, of course. My wife has even resigned herself, finally, to the fact that I will be up all night on this particular post-chemo night, and that the best she can do is to greet me happily in the morning to ask how it went.

I assume she is asking if I got thrown out of any web sites or p*ssed off the President or something of that nature. How CAN it go?

As this night has become morning (it is now 3:17AM on Friday), I am fairly confident that the decadron has kicked in, and that we are in high gear, breaking the speed limit, listening to trucker songs, monitoring the radar detector, got our ears on, and are headed for home, which is a thousand miles away right now.

But the pedal is to the metal, and we will make it.

Some people say the steroids make them fat. Most of them, to be honest, are women, at least within my small circle of friends who have cancer, and that is perhaps because women are more observant about such things.

A man doesn’t know he is fat until he can’t tie his shoes without risking a heart attack or a hernia. A woman is fat when the pumps she bought three years ago don’t fit so comfortably around her feet as they did before she wore them out in public and got caught in a rain storm that probably shrunk the shoes rather than expanding her feet. There is a difference.

The man, of course, will figure out a way to slip into his shoes without worrying about a thing. The woman will refuse to buy new pumps and will instead invest in either a costly diet program that will fail or an exorbitant gymnasium that she will only go to for a month, after which she will ask her husband or significant other to tie her shoes for her if he loves her.

Not quite like that :). The woman will perhaps prevail. The man will not try :).

And if he does, by God, she will be most angry with his success and how easy it was for him to achieve it, while she sweats and toils everyday and sees no improvement. This is life as we know it.

And women say the steroids fatten them, give them an appetite, and make them large. Almost all of them, the ones I talk to. There is ONE lady who agrees with me, and actually enjoys the steroids, but she is a rare and delightful exception. Most women hate the steroids for reasons described above.

Me, I love my steroid. It destroys, completely decimates, my concept of day and night. I am lost. (By the way, I once worked with a physicist who had a theory about menstrual cycles and the moon, and he truly experimented on his wife by, unknown to her, turning the lights off in the bedroom earlier each night, to simulate the changes in the moon from full to none, just to see if it DID affect her cycle. He told me about this, rather casually, over hotdogs, at an Air Force picnic. I consider that unethical, of course, and moved away from him as politely as I could following another dog and a beer that he was kind enough to fetch for us, but also rather creative, and I only bring it up because I was talking about day and night and I am, after all, on a decadron buzz here, so cut me some slack.)

(And there is this: I would NEVER mess with my wife’s menstruation cycle. If I promised somewhere above that I would not pick on her again, well, she is used to me breaking vows (NOT THAT VOW!) and you should get used to it, too. Because here I go: I would NEVER mess with my wife’s menstruation cycle, because what if I was wrong and it lasted even LONGER??? NO WAY! Have I not suffered enough? Okay, I’m done. Almost done: those were great hot dogs! And the beer was cold! And you really have to have some respect for a guy who takes his science that seriously, do you not? I’m done.)

OncoMan cut my dosage the last time I was in the ChemoDrome, cut it in half, after I told him about my penchant for doing the dose and staying up until the next afternoon as a subsequent experience. He cut my benadryl too, to relieve the happy feet, and you may know that.

The happy feet are gone. They sit there, perhaps nervously pacing with nowhere to pace, but they are no longer happy, which makes me happy. They still tap, they still try to cross (I am working on that), they still lean out and they still point in. They still stretch, they still try to cross toes, they still try to play a piano if there is one nearby. But they are no longer happy.

For awhile there, I felt like Steve Martin, except that I am not funny and my hair is not white and I don’t make millions of dollars. No, but we both have experienced happy feet. Apparently, we are both over happy feet, which is sort of sad in a way, but I won’t get into that. This is not a Steve Martin retrospective, after all, at least not yet: the decadron may decide otherwise before the night is through.

I do, however, appear to retain the decadron buzz. And I get lost. Last week, for example, I really was up until after 1PM the next day. I bothered everybody I know with emails, harassed innocent poets, solved the world’s problems, including global worming and global warming (but have since forgotten how I did either, which has clearly led to the proliferation of worms in our dirt, sorry, folks, I may need to dig deeper on that one), and wrote strident editorials to my local newspaper which might explain why they say I cancelled my subscription :).

On top of that, I watered my plants, did all of the laundry, watched at LEAST half a dozen Law and Orders during the wee hours of the morning, including at least one I had not seen before (okay, only one, and I just had not seen the beginning of that one), and, of course, was obnoxious to my friends in CSN with my attempts at brilliant humor.

I love my steroid.

And when OncoMan, upon learning of this today, from my own big bragging mouth, took a gander at my dosage, which he had already cut in half, I remind you, I shouted, before he could suggest anything else, that I was FINE with the current dosage and that my wife actually enjoyed having ALL of the laundry in the house done when she woke up, and that my plants were actually living as a result of this, and please, please, don’t take my steroids away, I beg you, I beg you, sir, leave me with this small shred of energy and happiness, oh please sir, don’t take my steroids away, and yes, I will quit grabbing your leg and sliding behind you on these tiled floors, but please, don’t take my steroid away!.

Oh, sorry. I was reliving a moment. My bad.

So I said, um, Oncoman, I am good with this dosage, I’m doing fine. And he said, oh yeah, we’ve already cut it in half. That’s as low as we can go. And I have loved him ever since. And that was earlier today.

I don’t know how I will feel about him later in the week :).

But I have my steroid.

It is not so great for a great many people, I know. But, geez, it is like back in college and downing the no-doz for me, cramming for tests and writing essays for money, except without the nausea from the no-doz and walking over to the cafeteria for scrambled eggs that came out of a box, right before a French class at 8AM where you were not allowed to speak English. Did that suck or what?

Yeah, much better than that! Definitely much better than that. If you discount the reason for the steroid.

The above is a line from a song in a Broadway musical of the late 60s or early 70s called Hair. If you are old enough to remember it, you might be old enough to think it was part of the beginning of the end, as Tallyrand put it, the end of the world, the beginning of total corruption and chaos. If you are just a bit younger than my dad (:)), you might recognize it as the same song with somewhat different emotions.

You might, in that latter case, think of it as a song of defiance and non-conformity and living on the edge and all of that crap that young people always believe about that which separates them from their parents, only very little of which is ever true. (I know I did!)

What IS true is that those of us of that latter group really did make a statement with our hair. It is true that those who went before us (including my dad) had ducktails and listened to Elvis and Hank Williams Sr. and were feared as young rebels a la James Dean even before there was a James Dean (I get my history from my dad :)), but I really doubt that ever before us has there been a time when hair was such a, well, ‘Freak Flag”, as Crosby, Stills, Nash, & Young described it so eloquently.

I am not a fashion mogul, so I do not know what the hairdos were called back in the day, but I know that women, young women, stopped wearing their hair in beehives and pageboys and whatever and started just, well, wearing it (pre-Farrah :)). As for us guys, some of us grew our freak flags.

We let it grow.

I had hair at one time that reached past my nipples. A foot long or more. The cops would beat you up for that alone. And did! Hair was important, but we tried to act like it wasn’t. I am not trying to brag here. You all do more with your hair today, and your lips and tongues and noses and navels and genitals, than almost all of us would ever have DREAMED of doing, and had we dreamed of it and spoken aloud of it to our friends, we would have lost them as well as our freedom. I grant you that and salute you for it. 🙂

But we did have hair and I like to think we started the trend that allows you to look like morons today if that is what you want to do. Pre-mullet, I’m talking :).

And I have always had hair. When I was a kid, I had curly hair. My mom loved it for some reason and was really bummed out when my dad was away at sea and she cut it herself and sent me to school and they sent me home for a second try, this time by a professional :). Talk about being embarrassed. Scarred me forever. That’s probably how I eventually got cancer, now that I think about it :).

Chunks. Splotches. She didn’t know what she was doing, although she meant well. So at least I’m used to it.

Now, I am losing my hair.

I mean, yeah, I was sort of losing it slowly even before this chemo treatment, due to, um, well, um, old age! But it was a slow thing, something I could do gracefully, you know, like Harrison Ford :).

Now, it is coming out. This time I am doing the carbo and taxol and I am told the taxol will take it right out. If I have not said this before, OncoMan told me there was a 50% chance that I would lose my hair and I said, you mean now the other 50% is gone too?

So I was ready for it, right up until it happened. Started to happen.

I spent some time in the CSN chatroom when there was one, and there, and other places, I would try to placate women who were concerned about losing their hair by telling them that bald-headed women can be quite sexy. Not that they paid any attention to me, but it’s true. I won’t even go past Sigourney Weaver. I rest my case.

And I always suspected that some of it was vanity. At LEAST some of it.

The thing is, I have some background here. My mom, second go-round for her, with the ovarian, lost her hair and so my dad shaved his head in support. Let me tell you what is obvious: you have to love my dad for doing that. Let me tell you what is less obvious: my mom looked rather fine with a bald head, while my dad looked like a goofball. I never mentioned that to them, of course.

But it was true. My mom looked fine. She looked like an alien come to save us from ourselves the first time I saw her that way, I’ll admit, but it was really easy to adjust to her with that look, and she actually remained an attractive woman without the hair.

My dad, on the other hand, looked like a goofball, and I love him for the gesture, but he looked like a goofball and looked like a goofball for as long as he was a bald guy. Some heads are not meant for baldness. His was one.

Again, I love him for it, and I am not trying to critique here. I am saying that I am losing my hair.

I wondered about it, frankly. When other people talked about it, I imagined that they just pulled huge clumps of hair out of their heads, and maybe they do, I don’t know. I imagined there came a time when, like the teacher of my youth after my mom’s failed haircut, someone said, hey, time to trim that down to stub, my friend!

And the truth is that I had chemo and rads back in late 2005 (cisplatin) and nothing happened to my hair. Why DO I feel immune?

This time, I was told that carbo and taxol gave me a 50% chance of losing my hair. I joked, I said, you mean the other 50%? OncoMan smiled, hesitated, and when he got it, said, Yeah.

Okay. Joke is over. The 50% is here.

I am losing my hair.

It started when I began this danged chemo of course, but the realization happened when a couple of nights ago I ran my fingers through my hair (if my wife loved me enough to do that, I would never have known, but more on that later) and out came strands of hair. Not clumps or clods. Just strands.

Maybe 30 or 40 black and sometimes grey ones. And each time I did this, more came out.

It got to the point that I was fascinated by it while my wife and son were screaming at me to QUIT DOING THAT!!!

Of course, I kept doing it.

I am not yet bald, by the way. It appears, in fact, that I have lots of hair, if you are me and just looking at me in the bathroom mirror (I don’t recommend it, I’m just saying). Even after a shower and a brisk combing with a very unforgiving brush, it seems that I still have quite a bit of hair up there. I am not bald.

My daughter, who lives in another place and is pregnant with my first grandchild, asked if I was losing hair everywhere and I said, and I quote, “I don’t know. I haven’t scratched my b*lls lately.” Fortunately, she has her dad’s sense of humor. She laughed. I love to hear my daughter laugh :).

And I don’t know. I’m afraid to check. Thing is, I still have quite a bit of hair on my head, so let’s deal with that, you know? For the time being.

Back to my wife: now, she doesn’t run her fingers through my hair; she pats me on the head instead, like I’m being a good dog. 🙂 She is afraid if she touches my head, hair will fall out, even though she doesn’t say that. I think she is more worried about me going bald than I am. She was the one who suggested it was fine for me to grow a pony tail (see the above re my early days and long hair) because she knew that it was falling out anyway. Now that it is happening, I think she is wishing for the pony tail instead.

I will be bald soon. I am wondering how you do that, and beginning to understand for once how it is not just vanity for women.

Here is the deal, at least for me: I have had cancer pop up twice in two different places and had some serious work done, and even so, it was never so real that I could not laugh about it and even ignore it to some extent. But losing all of your hair tells the rest of the world and even YOU that you have had cancer. Does that make sense? It is not about vanity. It is about reality slapping you in the face.

Really weird, I know. I don’t speak well because of the tongue thing. I mean, we are talking about someone who spoke VERY well, and who could sing with the best of them, and now I can do neither ‘with the best of them’. I have issues with eating. Now, I have problems with breathing on occasion and one of the few musically-related things I thought I could still do well before this last episode, playing the harmonica, is now also a nebulous proposition, at least for now.

I think it is the human condition to some degree. Maybe it IS still vanity in some form. Just not in the way I used the word (because it’s me? :))

I’m crying, and I haven’t even really lost my hair yet!!!

And I’m a dude, dudes!

Here’s the thing: it is hard to imagine a bald-headed woman being ugly, with one exception, and I think we know who THAT is, but that is a personality issue for Britney, don’t you think? Women seem to retain their beauty without hair. I should advise that I have hardly ever met an ugly woman, while I have met many ugly men. But you catch my drift, right? A lack of hair does not seem to adversely affect women. In fact, it sometimes, maybe often, seems to add some appeal.

A bald woman, well, she seems to have some sort of independence and spark and defiance. You know?

Okay, I’m not suggesting that I have a bald woman fetish. I’m just saying.

Men, on the other hand, they have to be of a certain type. It worked for Yul. It worked for Telly. It worked for Michael.

But I have never met a woman who was bald that I thought looked like a pinhead, and I have seen a lot of men who looked like pinheads with no hair.

No hair on purpose, I mean.

I am going to be a pinhead.

I don’t have the heft and the big head. I am going to be a pinhead.

That is fine, of course, but no more imagining that women dig me.

I will have to face the facts: I am a pinhead. It is coming soon to a theater near you. And near me. Too near to me: I am a pinhead.

A lot of my friends can get away with being bald, and choose not to (:)). I can’t get away with it. People will notice :).

And they will know it wasn’t on purpose when their first thoughts are “He looks like a pinhead! Why did he do THAT?”

I’ll be fine. But I’m not scratching down below. I don’t EVEN want to know. 🙂